Establishing disability weights for congenital paediatric surgical disease: a cross-sectional, multi-modal study

BackgroundQuantifying burden of disease using disability-adjusted life-years (DALYs) is a recognised method of establishing priorities for health-care resource allocation. Disabilities weights (DWs)—needed to calculate DALYs for surgical conditions—are currently underdeveloped or non-existent in paediatric surgery. The objective of this study is to establish DWs for a subset of paediatric congenital anomalies prevalent in Kenya and Canada.MethodsWe provided 15 expert-panel-derived health states using six disability domain descriptions adapted from the EuroQol-5D to health professionals (physicians, nurses, social workers, and therapists) and community caregivers. Participants rated each health state using four health valuation exercises including two psychometric (preference ranking, visual analogue scale) and two economic (paired comparison and time trade-off). Mean DWs from each exercise were calculated and combined to yield overall DWs for each health state on a scale from 0 (perfect health) to 1 (death). We examined country data and statistically analysed any differences in DWs between the two countries.FindingsIn total, 154 participants, matched by profession, were recruited from Kijabe, Kenya (n=78) and Hamilton, ON, Canada (n=76). Overall DWs for 15 health states ranged from 0·15 to 0·98 (SD 0·0–0·17), with little difference between countries. However, DWs generated in Kenya for severe hypospadias and undescended testes were higher (0·52, SD 0·20) than Canadian-derived DWs (0·27, SD 0·15; both p<0·0001), while cleft lip and palate (0·25, SD 0·51) were lower in Kenyan participants than Canadian participants (0·18, SD 0·41; both p<0·0001).InterpretationWe established novel DWs for paediatric congenital anomalies using a low-cost multi-method approach. DWs do not appear to differ significantly across cultural contexts and can be used to calculate burden of global paediatric surgical disease.FundingThis study was funded by a clinical research grant from the McMaster Surgical Associates in the Department of Surgery at McMaster University.